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consciousness

This was really hard for me to read as this is what they said about Jamie and a blood clot in the basilar artery from his auto accident. The doctors told us that the blood clot showed where the stroke occurred.

Oh, how I wish I knew what I know now about the lie of brain death. It is so hard to speak intelligently when you just don’t understand what the legal definition of death is. I guess this is why I write to give other families a chance to understand when they say your child is dead.

Maggie Worthen was a week away from graduating from Smith College in May 2006 when she suffered a massive stroke. Her classmates found her unconscious on the floor of her dorm room, unable to speak or move.

A CT scan revealed that the stroke in the otherwise healthy 22-year-old was brought on by a blood clot in the basilar artery, a critical blood vessel in the back of her head that supplies oxygen-rich blood to the brainstem, the part of the brain that controls the body’s basic life support system. It took 12 hours before neurosurgeons at the closest trauma center were able to remove the clot and restore blood flow to Maggie’s brain.

“They told me most people don’t survive these kinds of strokes. If she made it through the next couple days, it was almost certain she would have no meaningful recovery,” says Maggie’s mother, Nancy Worthen.

As Nancy grappled with Maggie’s prognosis, she felt pressured to make some harrowing choices. One doctor advised removing Maggie from the ventilator and letting her die. Another suggested foregoing the insertion of a feeding tube and tracheotomy that would help Maggie breathe. A representative from an organ procurement organization approached her for consent to transplant Maggie’s organs.

But Nancy resisted them all, believing in the resilience that had always defined her daughter.

Dr. Joseph Fins, chief of the division of medical ethics at Weill, says Maggie’s experience and that of others like her raise troubling questions about how people with serious brain injuries are diagnosed and cared for. “Patients like Maggie are routinely misdiagnosed and placed in what we euphemistically call ‘custodial care’ where they have no access to any treatments that might help them recover or give them a chance of engaging with others,” says Fins, even as research suggests that 68 percent of severely brain-injured patients who receive rehabilitation eventually regain consciousness and that 21 percent of those are able to one day live on their own. A recent post made on www.sideeffectsofxarelto.org about brain blood clots demonstrates a truly somber attitude to victims of such injuries.

Dr. Joseph Fins interviewed Maggie’s family along with over 50 other families in similar situations. Almost all their stories shared a common thread – that the injured person was immediately “written off” and families were asked to make “what he calls ‘premature’ decisions about their loved one—such as whether to withhold or withdraw care or to consent to organ donation.”

(Yes that is the choice)

Dr. Nicholas Schiff, a neurologist at Weill Cornell Medical College, says even one person wrongly diagnosed when they have intact mental life is one too many. “Imagine being conscious in a body in which you have no control. It’s difficult to imagine anything more terrifying.” He attributes misdiagnosis to a number of factors, chiefly neglect. “Society as a whole has given up on these people. When somebody is not waking up, it gives people an uncomfortable feeling. It’s easier to say, ‘Nope, they’re not there.”

(And those that believe there is HOPE have their claims and faith disregarded)

EEG tests have shown that brain injured patients can demonstrate consciousness undetectable in a bedside test. And because the technology is portable, cheap and doesn’t require a patient’s active participation.

(We asked for and didn’t get the EEG)

“There are a lot of people out there who could be helped but aren’t,” says Schiff. “All patients should be treated as if they too have that same potential for recovery.”